MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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ENaggle29's picture
Replies 4
Last reply 10/2/2014 - 7:53am
Replies by: Anonymous, ENaggle29, Janner

First off, researching something when you get diagnosed is not the way to handle things, but unfortunately, it is what I am having to do.  This is going to be my first post, and probably my most frightening, not because I found out I have Melanoma, but because I know NOTHING about what I am about to embark on.  Sure, I've heard all about it, been scared about it, but always had this "never will it happen to me" idea stuck in my head.  But, here I am, writing about it because it is true.  Regardless on how I want to think.

My derm is having me go to the oncologist for treatment and finding the stage.  I have been having moles removed most of my life.  This last time I went, I only had one removed from my right, middle back, and was going to have more removed later during a surgery (it was scheduled for Tuesday of next week).  That has since been cancelled and they are wanting the oncologist to take care of further removal along with plastics.  

This is all forgein to me.  I have read through a lot of posts, but most of the new diagnosis seem to have a few answers.  Me..I have none.  The diagnosis came from left field.  I am not even sure of what questions I should ask.  Shoudl I call and try to get my appointment moved up to stop the madness going on in my head?  What do all of these words mean?  What will my treatment be like?  

What kind of assistance can any of you help with?  Where should I start?

Thank you all for listening to my rant and help!  I appreciate it!

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RJoeyB's picture
Replies 1
Last reply 10/2/2014 - 8:20am
Replies by: marta010

As scheduled, I had my brain MRI on Monday, and while the images weren't pretty, frankly, they weren't surprising given the symptoms I've had.  As far as my left-side motor control issues, there has been some additional improvement since my last post with the reintroduction of the dexamethasone steroid.  Nothing dramatic, but I can move my ankle and toes a little more and my arm, hand, and fingers are becoming a bit more stable and functional again.  I'm still using a quad cane and need assistance with some trivial tasks (like parts of getting dressed), but again, have seen some improvement.  My wife continues to be helpful and patient with me despite my steroid-induced deteriorating attitude ;-) — speaking of which, the now familiar irritability, jitteriness, fatigue, sleep disturbances, and fat deposits from the steroid are all returning, too.

The MRI images showed a significant increase in the area of cerebral edema (swelling) over both my June and July scans.  It had improved from June to July with the steroid, so rather than continue to improve on its own as the steroid was tapered, the radiation necrosis and accompanying edema both worsened.  My wife was pretty upset seeing it, but as I said, I wasn't surprised myself — there was no way it was going to look better radiologically with the symptoms as bad as they've been.  The central area of necrosis itself was larger than I expected, but according to both the radiologist who read the scan and my radiation oncologist, it still appears consistent with necrosis and not tumor.  
 
The question remains about what to do next.  The common approach that I've written about before is to play the game of trying to manage the symptoms with the steroids, which won't treat the underlying necrosis, while waiting for the necrosis to resolve on its own, which often happens but not always.  The downside is the possibility that this could go on for a year or more of going up and down on steroids, which isn't good for anyone, especially a Stage IV melanoma patient who has had some benefit from multiple immunotherapies and doesn't want anything suppressing that "amped up" immune system.
 
On the unexpected side, my radiation oncologist is leaning towards using Avastin (bevacizumab) to treat the RN.  Back when this started in June, she briefly mentioned Avastin as a possibility that we might consider down the road.  There are some small studies that have been conducted in the past five years or so that show pretty good results treating RN, regardless of the original tumor type, because this use really has little to do with treating cancer.  Rather, just as it can restrict the growth and permeability of blood vessels (angiogenesis) needed for tumor growth, Avastin can use this same effect on necrosis tissue in the brain.  While there are some newer trials using Avastin in combination with other agents to treat melanoma, it hasn't been shown to be very effective with melanoma as a single agent.  But again, this has almost zero to do with melanoma and is about treating radiation injury to healthy margin tissue.  An upside is that rather than just manage the edema symptoms, if it works as hoped, it should treat the underlying cause of those symptoms, i.e. the necrosis itself.
 
There is still some coordination and consultation to do over the next couple of weeks before we officially decide to proceed this direction.  First up, I have an appointment with my neurosurgeon next week for him to see me and for him to weigh in, then he, my radiation oncologist, and medical oncologist will all talk and hopefully come to consensus.  Surgery is a possibility, but as far as we know, no one thinks we're at that point yet.  Ultimately, if we do the Avastin, it will be my medical oncologist who will need to order and manage the treatment delivery — for RN, the study protocols have typically given four IV infusions, each three weeks apart (same schedule as ipi).  I also have my next regularly scheduled full-body PET/CT in two weeks, so we want to get through that before deciding to do anything else, on the chance that the PET discovers anything new elsewhere that would contraindicate either Avastin or continued dexamethasone.  They may also be able to do a computer image fusion of the brain portion of the PET and the MRI to provide a little more insight into the necrosis itself; it's not typically all that useful, but since they'll have them both, it's worth a look.  We're of course praying that the PET comes back otherwise clear, but are too experienced at this now to not be prepared for a surprise.  In the meantime, I'll continue on this current dose of dexamethasone and hopefully see some additional improvement, and I have both OT and PT starting up to help keep me functional and operating a little better through this.
 
Thanks for reading and if anyone out there has any experience with Avastin as treatment for symptomatic radiation necrosis, I'd love to hear about it.
 
Joe

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 An Invitation to Witness the Regression of a Stage IV Melanoma (a cure?)

 

http://www.atavisticchemotherapy.com//content/cancer_treatments#case_inf...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Kerrid74's picture
Replies 3
Last reply 10/1/2014 - 8:04pm
Replies by: hbecker, DZnDef, Janner

I just got a call that the wide excision of my right upper arm and sentinel node biopsy came back clear.  Which is good.  But I still feel like I'm holding my breathe.   I know this cancer is vigilant and always wants a way back in, and I will be just as determined in my follow ups.  But after all that I've been reading there are so many stories that begin like mine, all clear and then boom,6 months or 6years later one little guy got away and now it's stage IV.  Be honest- should I be demanding a scan or blood work or anything that might help in just a tiny way to secure my mind that we really did do everything we should have?  The lesion was considered "not thick" at .9mm in thickness and a mitotic rate of <0 with no ulceration. But deep enough to warrant snb. 

thank u everybody and may the force be with u.  The strength ppeople exhibit on this site is  overwhelming.  

Kerri

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Eileen L's picture
Replies 4
Last reply 10/1/2014 - 1:26pm
Replies by: Eileen L, Tim--MRF, Fen

I am a seven year stage 4 survivor on /Vemurafenib/cobimetinib combo as part of the Phase 1 trial. Have been NED for the past 18 months or so, have had a wonderful response to the Braf/MEK combo.

Have lived long enough to have developed breast cancer! Looks like it is HER2+ so treatment will consist of targeted therapy, probably Herceptin.  

Anyone out there on a Braf/MEK combo being treated for a second cancer with targeted therapy? My oncologist hasn't heard of anyone in my position but believes it can be done without drug interactions since the targets are so different!

This turn of events has totally thrown me into a tailspin! I feel like I have battle fatigue, can't  quite believe I need to be a breast cancer warrior as well as a melanoma warrior! 

Eileen L

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Shollands's picture
Replies 6
Last reply 10/1/2014 - 12:52pm

Hi Everyone

I have my first mole removal coming up and am very nervous!

 

i have been a regular sun bed user with fair skin that burns easily.

Has a new mole appear on my chest but wasn't worried as heard that it is common to develop new moles up till your 30's.

However, in the space of the last few weeks it has evolved, changed colour, got darker and is getting more raised by the day, nothing like any of my other moles.

am very scared at what the outcome may be. 

Any advice you can give would be really appreciated.

Thank you all

 

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ABELL's picture
Replies 9
Last reply 10/1/2014 - 7:20pm

Hi everyone,

Please read prior posts for history of the patient...

Need a little advice, really confused and in the dark. Best friend had cyberknife sometime in early August... Started Yervoy August 14th. Only on 2nd treatment now. Her condition has declined 110%. 

 At first, she was tired... Still allowed visitors, communicated via text & answered phone calls. Then the texts got jumbled, didn't make sense. Then those stopped. Now, she can no longer walk or talk on most days.

About a week and a half ago, she went the doctors (for declining health) they advised that she might still have swelling in her brain. They put her back on steroids.  She ended up in the hospital last night, dehydration plus she was not able to talk at all, could not get up out of bed.

They kept her overnight for MRI's, once last night & scheduled another one this morning (not sure why 2 MRI's would be needed).

Is this a normal reaction to Yervoy? Is this a sign that she is not responding to the drug?

I hear of people continuing to work while doing this treatment... Why is her body/mind just shutting down?

 

Any insight would be incredibly helpful...

Thank you!

Amanda

 

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oldblue's picture
Replies 6
Last reply 9/30/2014 - 9:45pm
Replies by: Squash, DZnDef, oldblue, ecc26, Anonymous

 

Hi all,

I recently read the avemar research and was surprised that most of it was never followed up with larger studies or trials over longer time in the west. Most fowhat I read came from Russia or Hungary. Maybe there is more research but I haven't found it.

I'm also awareof a clinical trial currently recruiting for high dose vitamin D supplements for those at stage 3 - at least it is in Australia.

Is anyone aware of any other alternative options out there? I am interested in it as an adjunct to more formal treatment regimens as long as it doesn't interfere with them.

Or,is there a website that has them?

Thank you,

Nigel.

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kalisama's picture
Replies 8
Last reply 10/1/2014 - 3:36pm

Stage IV, BRAF positive, active mets in brain and breast.

Started on Zelbarof for nearly a year after brain excision and gamma knife. Developed a met in shoulder and was switched to Mek/Taf as soon as it was approved. New mets in brain and in dermal lining of brain, as well as in left breast. Gamma knife has not shown to have worked on brain lesions a month ago.

Monday I begin Ipi with my only goal to get to Keytruda. I have never felt good about Yurvoy option and still do not. I have a colostomy resulting from divriticulitis, which I feel should exclude me from the Ipi prerequisite as clearly I have a sensitive colon.

Merck has refused me off label use of Keytruda, so my only choice is to start Yurvoy. I will be receiving 5 gamma knife treatments on my breast as well, starting after the Ipi infusion Monday and once per day going through Friday.

I'm posting this because I'm scared of Yervoy. Can't say why, it's just a feeling in my gut. If those of you who have done Ipi can share some of your experiences with me that I might find helpful, I'd really appreciate it. I'm somewhat new to this forum but have found nothing but wisdom here, and feel that y'all are the only ones in my world who are not speaking Swahili.

Thank you in advance for your time,
kali

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AusLoveBug's picture
Replies 2
Last reply 9/30/2014 - 5:30pm
Replies by: AusLoveBug, Janner

Hi all,

I'm a 36y.o. Female from Australia. I know I've been very lucky in catching my Melanoma early, I was just hoping someone could put my biopsy report into layman terms for me, for my own understanding. I have to have more skin cut out tomorrow to be certain it's all gone. The part that worries me is that it seems like it was right on the margin & things I've read online say things like, when too close to the margin, cells can be pushed further in. I refuse to google anymore as I'll just make myself paranoid.

My story goes: I noticed a mole on the back of my shoulder that I just couldn't recall noticing before. I wasn't sure if it was new, or was something that was always there just incognito or if I'd seen it a million times but not actually paid attention. I went to the doc as I had a nagging feeling that something wasn't right but even my GP thought it was ok but suggested removing it & checking it anyway if I wanted to. Funnily enough, I said "Can you just take it out as even if it's ok now, it looks like the kind of thing that may be a problem later"... There was nothing overly suspicious looking, it was flat, 5x5mm, but it did have a paler colour in the middle - but that feeling kept nagging away so I trusted my instincts. Whew!

The microscopic examination: Level 1 superficial spreading in-situ melanoma. Nests of atypical epithelioid & spindled melanocytes at the dermal epidermal junction. There is lateral confluence of nests & there is confluent growth of single melanocytes along the junction extending along adnexal structures. There is limited upward drift. There is a dense superficial chronic inflammatory infiltrate, consistent with early regression. There is no dermal component. Lesion lies 0.2mm from the nearest lateral margin.

So I know it's only in the top layer of skin & all should be ok, at least for this one, I just want to know what all that stuff is explaining. Could someone help me?

 

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ScaredV's picture
Replies 7
Last reply 10/1/2014 - 12:02pm

Hello all... My fiance got his SNB done today.  His melanoma was 1.2mm thick and on his jawline.  They removed one lymoh node from his collarbone area. 

How many lymph nodes are usually removed during a SNB? Is the fact that only one was aremoved a good thing? 

 

Now we wait and pray for results... The hardest part :( 

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braunerk's picture
Replies 4
Last reply 10/1/2014 - 10:17am
Replies by: Linny, evleye, DZnDef

So I finished Ipi and they did a scan with shows some growth in my tumor but I don't have any new tumors so both good and not so good news. I have something on my left ovary and now they are worried I might have ovarian cancer along with stage 4 melanoma. Can't see to catch a break. Anyone out there with a similiar problem? 
Thanks

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Scribe's picture
Replies 4
Last reply 9/29/2014 - 8:25pm
Replies by: Scribe, Janner

I realize that so many here have much more serious situations, but if someone wouldn't mind commenting on this, it would be much appreciated. My husband, who is 72 and has some cognition issues, was diagnosed in February with melanoma and had a wide exicision in March. He hasn't asked many questions of his doctor about this. It has taken some time, but I was able to go with him today to the dermatologist and got a copy of the original pathology report. I realize there is probably nothing much to be concerned about, but since he is older and has a long history of other skin cancers, including some large sqamous, I just want to have a sense of this:

Melanoma in situ. Reviewed by dermapathologists. 2.0 x 1.5x 0.1 cm.  Poorly defined lateral margins and comprised of atypical melanocytes throughout all levels of the epidermis.

(Later, after the WLE, the plastic surgeon told him the biopsy report had said they had missed 1 cell.) 

Thanks in advance for your comments. 

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Doug-Pepper's picture
Replies 7
Last reply 9/29/2014 - 2:43pm

Routine chest x-ray showed something on lungs. Pet scan showed nodule in right lower lobe measuring 1.6 cm x 1.5 cm. & another smaller one.  Another ct scan scheduled for tomorrow on lungs &  brain also. We meet with a surgeon on Friday.Not sure if they will biopsy or remove. Any advice or prayers are greatly appreciated.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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